Teen Finds Disability Isolating Without Peer Network

No matter how many friends she has, Melina Nakos still has no one to share her struggles and frustrations of being a double amputee. This piece is the first in Teen Voices’ Girl Fuse series, an initiative by and about teen girls with disabilities.

SAN JOSE, Calif. (WOMENSENEWS)— Skim milk or 2 percent? What’s even the difference? Skim milk is supposed to be healthier, right? But it just tastes like water pretending to be milk.

girlfuselogoI’m in the dairy aisle at my local supermarket. Sweats, t-shirt, hair not having been washed in several days and all I want is milk for my Cheerios. So why is it turning into an existential crisis?

I look out of the corner of my eye and see a kid standing there. He’s nine, maybe. This wouldn’t be an issue in any other 17-year old girl’s life. Yet for me, he stands there with his blue eyes flicking between my legs and my hands and his mouth hanging open like a fish gasping for water.

I quickly put both cartons down, cross my arms to hide my hands and stand very still. Walking away would make things worse. With my awkward gait and obvious differences, it would just attract more attention.

Stand very still and stay calm, I tell myself. They can smell fear.

I’m an amputee of both of my legs, one below the knee and one above, and all my fingers except my thumbs. I’m physically functional, you could say. Despite years of physical therapy since my amputations at age three, I have never gained my desired level of mobility.

Whenever I leave the house, I get stares, invasive questions and uncomfortable situations. Handshakes refused, treated like a child at restaurants, unable to get through the day without being called an “inspiration” for stepping outside the confines of my home. My friends have nicknamed me “sympathy porn.”

They’re right. I’m not treated as a human being, but instead, as an object to be observed and prodded at—a walking and talking encyclopedia of disabilities.

I turn and look at the kid at the supermarket. We make eye contact. I’ve been told I’m intimidating, so I glare back. The kid ignores my look and continues to stare at me as if I’m a circus freak.

I wish I had someone to talk to who shared my situation. Instead I’ve been through countless fruitless conversations with countless clueless non-amputee friends.

“They’re just curious,” people say, brushing aside the deep-set insecurities years of isolation from the general public caused me.

Years of isolation from anyone who could relate.

I imagine what it would be like to know another girl with amputations similar to mine. We could talk, exchange stories, support, advise, love and accept each other. Someone to understand what it’s like to be told, “I’m sorry, I really like you, but I just can’t date an amputee.” Someone to understand what it’s like to be asked, “Could you join the track team? I really think you’ll make the rest of the runners feel better about themselves.” Someone who understands, period.

I’m not afforded that luxury. I’ve met adult amputees, but they’ve passed the stages I’m currently struggling through. They look through their teen years with rose-tinted glasses.

“Just accept yourself,” they say.

Maybe I just want someone to help me get there—a partner to climb our own personal Everest.

The kid and I are still in a deadlock. Our audience? Yoplait yoghurt. The referee? Grated cheddar cheese. My coach is the skim milk yelling at me from the sidelines.

I take a deep breath.

“It’s not polite to stare,” I say.

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